Feeling My Body Fail

This has been a rough six months on top of a weird twenty years.  I’d learned to deal with diabetes, fibromyalgia, chronic pain, degenerative disc disease, nocturnal seizures (left temporal), degenerative joint disease, GERD, and the temporary effects of acute disorders like multiple pulmonary emboli (all three lobes of my right lung and right pulmonary artery), and acute promyelocytic leukemia (APL), or acute myelocytic leukemia- subtype M-3.   The longterm effects of chemo have been rough and more noticeable  in the last few months, and the thought at this time is that much (not all)  of what has been going on recently is a combination of chemo effects, and  the progressive nature of diabetes (even with good control, though chemo totally ripped my blood sugars to shreds).  I had chemo DAILY for 20 months (ATRA – all trans retinoic acid, M6 mercaptopurine, arsenic, methotrexate, and initially daunarubicin, ara-C, and assorted meds for nausea, fluid retention, and protective eye drops.  I was also on gentamicin and vancomycin for most of six weeks.  I think that things are just catching up.

This summer, a lot started to happen at once.  The GERD (reflux) got really bad, so I was sent to a gastroenterologist (GI) for some testing.  Most of those tests turned out relatively OK (to a cancer survivor, that means nothing malignant… something could be rotting and ready to fall off of my body, but if it’s not cancer, it’s pretty much OK).  I have chronic gastritis (so no more NSAIDs – or ibuprofen type meds which is a bummer for pain management), and some irritation in my esophagus, and I was supposed to have a gastric emptying test (related to gastroparesis- a diabetes complication, but because of pain, I can’t lie on my back as long as is required…. and if I burp yesterday’s lunch in the morning, that tells me something isn’t moving).  I tried to have the esophageal manometry test done last week, but SURPRISE !!!  I couldn’t swallow the tube !   I’m being tested for swallowing problems.  Now, I have to be knocked out, and have the tube put in under anesthesia, woken up, then swallow water 10-12 times, then have the tube pulled out).   I’ve had to eliminate a few foods/food groups, but that’s OK.   Marinara sauce, chili, fried foods, ‘high volume’ foods (like full meals), and some other things are out of the picture for the GERD. I cheat once in a while, but have to have Tums and Gas-X available.   For the swallowing issues, dry foods, meat without ‘lube’ (sauce, gravy, stewed), celery, hard breads, rice without some type of moisture, etc are out.  I literally have to pull the food out of my throat before inhaling when something gets stuck.  I keep 8-inch curved hemostats next to where I eat. It’s rather scary.

The pain.  Oy.  I don’t remember ‘pain free’.  I’d gotten used to just dealing with it, but this summer, the neuropathic pain got very noticeable, and the burning pain along my right outer thigh got really bad at night.  Now both of my feet burn at night- though neither of them are every night.  The sensation during the day along my right leg is weird.  If I stand too long, I feel like my leg will give out.  I got a wheelchair last week, and the one time I have used it so far (only need it away from home at this point) has been very helpful.  I’m going to have to use the scooter at the grocery store from now on, and not have a three-day recovery period every month when I go to do my main shopping. I’ve got a few volunteers who have agreed/offered to come with me to push the larger cart.  It’s just too much now to do monthly shopping.  The pain management  doctor (board certified in pain management, and ‘legit’… no lines around the block, no shady characters in the waiting room, and lots of rules about how he does things that I respect) said that if the methadone doesn’t work, then the next step is a peripheral nerve stimulator… kind of like  a pacemaker device implanted under my skin that sends out little zings to trick how my body perceives pain. (BTW, methadone is a legitimate pain med, not just used for exchanging it for heroin in drug addicts).    I am usually pretty tough during diagnostic tests, and have had many, many MRIs over the years, but this summer I had to bail before the “with” contrast part was done.  I was in tears just getting the “without” part done.

I did get through the EMG (done at my neurologist’s office, by her), which clarified that it’s a progressive sensory peripheral neuropathy… it’s gonna get worse.  The implications are kind of scary. I’m already noticing some altered sensation in my hands- so being in the kitchen is a little dicey (pun intended).  And, if I lose sensation in my right foot, driving will be out of the question.  Right now, I have enough sensation- and I don’t drive much, so it’s OK for now.   A couple of weeks ago, I was opening a box of stuff I’d ordered (monthly Amazon or Walmart supplies) and I didn’t feel the inner angle of the scissors ‘catching’ part of the ‘pad’ of  my right thumb… and it got cut off (about the size of a pencil eraser- and completely cut off about 1mm deep).  :/   That was pretty sore for a while.  It’s still not completely healed, but much better.  I’m going to have to pay much more attention to hands and feet.  The decrease in sensation means that I could whack something off, get an infection, and end up with an amputation (pretty common in diabetics).   ‘Help’ aids for opening jars, buying pre-cut veggies at the store, etc are going to be things to consider.  I got one jar opening thingie, and it was useless…. it fit around the tops of many sized jars, but without the strength to hold the jar in my left hand, it’s pointless.   I can still do the vacuum release move with an old cheesy can opener, and then get the lids off- at least for now.

My blood sugars were also getting wonky again so it was back to the endocrinologist. She wanted me to try a new type of long-acting insulin- but as usual, I had to check my Medicare plan D formulary to see if it was covered, and at what ‘tier’ for copay purposes… this year, it’s not good; next year I can get it !!  I’m so excited to be able to get a type of insulin that wasn’t popular in the 70s !!  She got me enough samples to get through until January 1st, which brought me to tears.  The short acting insulin is also going to be doable next year- and she got me samples of those as well !!    It requires me to pay three times more for my monthly premium next year, but it’s SO worth it for no deductible, full donut-hole coverage, and good monthly copays for each medication (I’m on something like 15 prescription meds and many over the counter meds that are always out of pocket).

Then there are the changes in the symptoms with the autonomic neuropathy /dysautonomia.  I was sent to a cardiologist (I’ve been trying to cut down on the number of docs I see, and that plan isn’t working well).  Because of multiple medication changes for my blood pressure meds (which is actually used to keep my blood pressure UP in a paradoxical way), and my blood pressure going down far enough for long enough to decrease blood flow to my kidneys ( that was ‘fixed’ with medication changes and more deliberate fluid intake), I needed someone to take a look at what is going on.  Dialysis has always been ‘the’ diabetic complication that I’m not sure I’d get treatment for; a machine 3 times a week indefinitely doesn’t sound like quality of life to me.  Anyway, the cardiologist sent me for a simple ultrasound of my heart (ECHO) and did a simple EKG.  No results on the ECHO yet.  She adjusted a couple of meds, and the next step is to add another med, which I do NOT want.   I’ve had a LOT of episodes of near syncope and increased heart rate (not necessarily at the same time, but if my heart rate stays up, I generally pass out because it will suddenly drop; I have to get home and get my feet up or just go to bed – which usually takes care of it).

So, I’ve seen my primary care doc, gastroenterologist, pain management doc, neurologist, endocrinologist, and cardiologist since this summer.  I do not like doctors’ appointments.  Leaving home is painful.  They usually want to order tests, which means more time away from home.   I appreciate their help (though the GI situation is horrible to get anything done; right now, I’m waiting to get the anesthesia assisted tube placement to measure esophageal spasms -achalasia is suspected-, and they have a very blasé attitude, even when I’m pulling food out of my throat because it won’t go down).   I need to get things treated to the point of maintaining independence as much as possible.  And, I’m going to have to suck it up and ask for help when needed.   That is hard, since most of my friends are 1200 miles away… or have lives/families/jobs/etc.   And I don’t like to be ‘dependent’.

I know I have a lot to be thankful for.  I’m still in my own apartment.  I still have my dog.  My dad is around (he’s 83, and has a full life; he’d help but the ongoing commentary at the grocery store for a full month’s shopping would be too much- he doesn’t shop for more than a few days since he eats out a lot), and he is a huge part of my life.  I have a lot of online friends and family.   I’ve got family in other states that I’m in contact with.  There’s a lot of good.   But it’s hard to see things changing.  Fortunately, as an RN- disabled, but still have my license- I know what to look for, and know what types of ‘help’ devices are out there.   I know when to ask my doc for things like the wheelchair.    I’ve got some word-finding issues, but my brain seems to be mostly intact- LOL.  😀   Always stuff to be thankful for 🙂

 

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Limitations Don’t Define Who I Am

My disabilities don’t make me who I am.  I don’t want someone else’s life, because that wouldn’t be me either.  I wish many things weren’t the way they are, but I don’t want to be someone else.  I’m getting very close to being 50 years old, and I’m OK being plain old disjointed, imperfect me.  I can’t be anybody else.  Trying to be someone else wastes the time I have.

I’m not able to do many of the things that I used to think defined me. I’m not able to work as an RN, and I miss that more than I can describe.  I miss taking care of other people in the way that gave me so much satisfaction.  I treated them as I’d want to be treated.  I learned how to empathize with their pain, and in turn be a better human being.  I miss those moments with someone who was going through something life-changing, and being able to offer some level of comfort.  But being a nurse doesn’t really define me. I used to think it did.  It’s a huge part of me, but it’s not all of me.

I’m diabetic, epileptic (temporal lobe nocturnal seizures), a cancer survivor (acute promyelocytic leukemia), I’ve got fibromyalgia, lung scars from multiple pulmonary emboli, bone spurs in my neck, chronic headaches, severe muscle spasms with any lifting or repetitive motion (groceries, trash, laundry), and dysautonomia, which causes severe heat intolerance, blood pressure and pulse changes, and very limited activity tolerance.  And none of that defines me.  It’s stuff that I have to deal with on a daily (sometimes hourly) basis…but it’s not who I am.

I had eating disorders for years (decades), but anorexia and bulimia don’t define who I am. I thought they did, and when I was in early recovery, I didn’t know who I would be if I wasn’t ‘the one who won’t eat’.  But all eating disorders did was mask who I really am.  They took away my ability to live normally and interact with people in a way that really put me into any sort of relationship. My main relationship was with the eating disorders. Nothing happened in my life unless I thought about how it would affect my ability to avoid calories.  That was my primary motivation in everything; any sort of real friendship was put way down on my list of priorities- though I didn’t see that at the time. It was a very selfish time in my life that I’m not proud of.  Eating disorders only steal time- they do nothing else.

Being a rape survivor doesn’t define who I am. It has had a huge impact on my life to have survived six hours of continuous sexual torture.  It changed how I interacted with people, and my ability to allow anybody to get very close.  But it’s still a relatively small part of my life… six hours changed a lot, but they didn’t change who I am at my core.

So, who (and what) am I?  I’m an average human being who wants to be accepted and have people in my life who accept me, warts and all.  I loved (and miss) all of my dogs, and am looking forward to getting a new puppy (and am waiting for her to be conceived at this time; I know where she’s coming from).  I care about people, and my heart goes out to those I see on the news, and hear about on FaceBook.  I miss my ‘old’ life before disability, but am learning to accept what my reality has become.  Most of all, I love God.  Without Him, I wouldn’t be here.  The consistency I feel when I read through the Bible (especially Psalms and Proverbs when I’m feeling badly) is what I can depend on much more than I can with human beings, who are fallible just as I am.  Every day is a chance to just ‘be’. I’ve had times when I thought that I would die, so life is precious.  I realize that in spite of things that have happened, I’m very fortunate in so many ways.  Some days, I don’t remember that as much as other days.  But I do understand that I’m here for a reason, and I’m thankful for that.

 

 

Mourning the Old Me

Disability of any kind is a thief.  It takes away being considered as valuable as other humans. It steals identities (my existence WAS being a nurse). It robs people of a sense of purpose and value.  It is a constant reminder of what was.  And, no matter how hard I try to figure out some way to still be that younger, healthier (though the health stuff started decades before my body finally pooped out), and active person, my body says ‘nope- can’t do it’.  I’ve had to adjust to a new normal- and I haven’t been that good at it. I have days when just getting from morning to bedtime is a struggle emotionally and physically.  I miss my old life.

I do realize that I’ve got a lot to be thankful for. My body is essentially intact (I’ve got all four limbs, and they operate moderately well). I can still think, though I do get a bit foggy at times. My sense of humor is intact. I have a decent home (apartment). I love my dog- crazy as she is ❤  I have my doll collection, gemstones, and books.  I’ve got a great computer, and a lot of cable TV channels.  But I’m not ‘whole’ when my body is broken down and examined.

I look relatively intact, which is great- but it also gives the impression that I’m ‘fine’.  What people don’t see are the endless days of chronic pain from fibromyalgia, degenerative disc disease (most of spine), bone spurs on my spine, osteoarthritis, and chronic headaches.  Methadone and Norco don’t give much relief.  I had a neck injection today (steroids and numbing medicine); it lasted an hour.  People don’t see the dysautonomia symptoms (though they might see my ice vest that I have to wear to avoid passing out in public when I get overheated- which happens in any environment over 55-60 degrees).  Indoors with the heat on is horrible- I can’t go to appointments or to anybody’s house without being packed in ice.  Nobody sees the nocturnal temporal lobe epilepsy, or the chewed up cheeks  and funky ‘hit by a truck’ feeling I get when I wake up after them.

Nobody sees the  struggle to just get basic chores done.  Going to the grocery store is agonizing, and I’m slow, so I go in the middle of the night. It’s cooler (still wear the ice vest), and fewer nasty people are there to sigh loudly, in what sounds like disgust, as they try to get around me. I stay over to the side as much as I can- but at night, I don’t have to deal with them.  Getting things in from the car to the kitchen is very painful. I’m done for the day after that.  I get paper goods and cleaning supplies mailed from Walmart.

People don’t see that getting dressed is a careful dance of getting the clothes on and not losing my balance.  I don’t ‘bend’ well.  Socks are a major problem.  Now, with this crazy thing going on with one of my neck discs, using my left arm is getting harder. And I can’t use it for moving or carrying things as well.

My apartment needs to be thoroughly cleaned, but it hurts way too much for me to get after it with any sort of real productivity. I can get a small area done here and there, but not what I ‘approve of’, and not like I used to get done.  My kitchen floor is disgusting by the baseboards.  I’ve decided I will do six inches of it at a time with a Mr. Clean Eraser.  I have things I’d like to get donated to charity, but I can’t move the boxes.  I need help, and am hoping that the people from a church who agreed to help will pan out.  I’m hoping.  A lot.

Looking at me, I look ‘abled’.  If I move, it doesn’t take long for someone to see that I’m definitely limited, and some things are just not possible anymore. It bothers me every day.  I want to be more useful. I want to be of value somewhere. I want to be missed if I don’t show up.  I want to have something someone else can benefit from (nursing skills).  I want my old life. It wasn’t perfect, but I was functioning at a level that kept me employed.  Knowing that the last place I worked at found me more of a liability than an asset  hurts (they had to call an ambulance at least 10 times in about 2 months at the end). They had nothing I could do within my limitations.  Being unconscious isn’t good for a resume’.  I had a good reputation as a nurse when I was in Texas.  When I moved back here, the dysautonomia and seizures got too bad.  I wasn’t worth anything as a nurse.  But I’ll always identify myself as being  a nurse. I keep my license current.  I got that license 27 years ago.  It’s still mine.

And yet, I try to look at what I have. I’m not homeless (which I probably would be if I had to rely on Social Security alone).  I pay around $500/month (MONTH) in Medicare premiums and co-pays- but that’s better than nothing. (Medicare is not free by a long shot).  But, I don’t have much leftover for much ‘fun’ stuff.  This month, I got some good bread- and I’m so happy to have it.  I’d love to get more fresh produce on a regular basis, but it’s not possible. But I get by.  I’m not eligible for the $133.00/MONTH that food stamp recipients get… how are people supposed to eat ‘lean’ foods  on that?  Healthy stuff is expensive. I’m trying to get blood sugars straightened out after what chemo for leukemia did… So I do the best I can.

I miss what was.  I have days when accepting this ‘new’ normal is really hard, and I don’t do it well.  But, it’s what I have to accept- and I’ve got to figure out how to be of value in some other way.   I believe that God has a plan for all of this- I won’t pretend I ‘get it’ yet. But I do have faith that for some reason, my life is what it is- and that I can be used to help others. Or it would be in vain.  I won’t go there.  I’ve survived too much to just be some joke. I want to be able to help people who have been through or have similar stories. I want what I write about the rape I survived to be of some value to someone else who has been too scared to talk about what happened to her.

I have to really accept that I can’t do what I used to do, and just figure out ways to do what I can to continue living independently, and with relative quality of life.  I’ve got the dog- she helps a lot.  And I do have people who care about me. I really don’t have social contacts- though I’m rarely ‘ok’ enough to meet someone somewhere.  I do have much more to be thankful for than the ‘disasters’ that have come to be no big news when they occur.  I watch the news, and realize that I’m fortunate.  While it’s not a competition, my life is worth living, even though I’m not ‘intact’…my challenges are still valid reasons for frustration- but in the long run, I could be doing a lot worse.  Some days  I remember that more than others. ❤